Thursday, January 30, 2014

Trigeminal Neuralgia and Turtle Fur

From reading the tittle, you might be thinking what do the trigeminal nerves have to do with turtle fur and do turtles even have fur?  But I promise this post is actually about something that I find extremely helpful during these frigid windy months called Turtle Fur.

As I've mentioned in the past, I have cranial nerve involvement as result of Sjögren's and unfortunately my trigeminal nerves have been affected.  Check out my previous post here and the awesome Sjögren's blogger Julia from Reasonably Well has also discussed it here.  

The bottom line is that trigeminal neuralgia is an extremely, extremely painful condition and unfortunately wind or cold touching the face can be a major pain trigger for many who suffer from it. This presents a great challenge for those of us who live climates with frigid and windy winters. For me, this means that in order to go outside in the winter, I need to keep my face protected at all times.  Something like a scarf just doesn't do it because the trigeminal nerve runs down the side of the entire face and has three main branches that also cross the face.  Scarves and even pashminas also don't stay up completely and can easily fall down as I've learned the hard way.  Believe me, I've tried everything.

A couple years ago, I found a product called the Turtle Fur Neck Warmer (pictured below) that has been a saving grace.  It is made from fleece, soft and warm, and feels good on my face.  I find that some materials can also be aggravating to my trigeminal nerves.  The great thing about this product is that it can go up all the way to right below my eyes and actually stays there.  Most other products I tried in the past would usually fall down at some point leaving my face exposed. My other favorite thing about this neck warmer is that it has a double layers of fleece so it's very warm.  

Image Source

Now, turtle fur isn't the only part of my trigeminal nerve protection routine.  I also wear big sunglasses, which shield my dry eyes and the branch of the trigeminal nerve that crosses the eyelid and forehead.  To complete my going outside garb, I wear a hat with side flaps that is lined with a fleece material that covers my forehead completely and adds double protection for my ears, which also have been impacted by Sjögren's (There are plenty of variations of these).  I might not be recognizable when I go out in the winter, but at least I have found a way to go out and be in less pain. 

This faux fur looked particularly protective

Mine is a variation on this lined with fleece

How do you protect yourself in the winter to minimize your autoimmune symptoms?

***Please note I have no relationship with any of the companies mentioned in this or any other post***

Thursday, January 16, 2014

Beware: Sjöggie in the Kitchen

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So I'm starting to feel somewhat better as I mentioned in my last post.  I decided it was time to get back in the kitchen and do a little cooking.  One of my winter favorites is Turkey Soup.  I find it to be richer and tastier than chicken soup and the meat keeps its flavor even after simmering for over an hour.  

For me, however, even making soup can be an adventure. The story goes like this. I'm enjoying my new found post-flare freedom as I cook my delicious soup. I am stirring the soup.  Smelling the soup.  Pretending to be a real cook.  Then the timer goes off.  It is time to taste the very hot soup that has been cooking for close to an hour and a half. I take the ladle holding boiling soup and manage to pour it not in my mouth, but on my chin.  My mind must have been wandering at that critical moment. The soup was very, very hot.  Did I mention it was hot?  Lucky me, I now find myself with a burn. 

At first, I didn't think it was much of anything.   But my chin is quite red where the soup hit it.  No blistering at least, but I definitely have a burn there. I had planned this to be my well-deserved hiatus from doctoring.  Instead, I will be at the doctor bright and early tomorrow morning to make sure that I don't need to do anything to prevent it from scarring or getting infected.  

This is the danger of being both a Sjöggie and a klutz!  When my autoimmune symptoms seem to settle, I absentmindedly injure myself. Well, I guess at least this is a "normal"-person doctor visit.  

I don't want any of this to be taken as a knock on my favorite Turkey Soup. In case any of you want to try your own version, I've provided the super easy recipe below. As with all my recipes, it is adjusted for me significantly due to wide-ranging food allergies.  I'm sure others can add additional flavors, but I'm very limited...and I still think this tastes great. 

Please do beware in the kitchen, I don't want anyone else to injure themselves on account of this soup!

Winter Turkey Soup


2 Turkey Thighs (or other Turkey Parts of your choosing)
4-6 Peeled and Sliced Fresh Carrots, 
8 Small Potatoes 
Fresh or Dried Parsley
2 1/2 teaspoons Sea salt or Kosher Salt
6-8 cups of water


1) Place turkey thighs in soup pot.

2) Add any vegetables you desire and parsley on top of turkey. ***I'm limited in the ingredients that I can use due to food allergies.  But if I could I would also add garlic, onions, and celery.***

3) Pour six cups of water into pot or enough to cover vegetables and turkey.

4) Spice accordingly with salt and pepper.

5) Bring soup mixture to boil. It usually takes about 20 minutes.

6) Keep soup partially covered and simmer for 1 hour.

7) Stir occasionally and add an additional half cup of water if too much liquid has evaporated.

8) Once finished cooking, transfer turkey to bowl.  When adequately cooled, remove turkey meat from bone and add back to soup. 

9) Serve with your favorite noodles or rice. 

Tuesday, January 14, 2014

Is the Flare Finished?

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain.  I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be.  Well, that changed fast. Pain medication wouldn't even touch it.  My eyes became so dry and painful that I had to be put on steroid eye drops.  I stopped being able to read or use a computer all together and went back into survival mode.

Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself.  I won't contact my rheumatologist, there isn't much anyone can do for me.  But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind.  Well to be honest, my husband had to partially convince me that it was time to seek medical help.

I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues.  But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks.  (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)

Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot.  At this point, I was at least sure I was not the only patient who had this happen.  It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.

I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients.  As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!